Dear “Autism Parents”,

I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.

I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest. I am Julia, and a significant fraction of Julia is autism (and thus, via the transitive property, I am autism but that’s not the point). Am I a writer because I’m Julia, or because I’m autistic? My writing is good in its own right, I am told, and it’s also fundamentally shaped by my neurology–just like yours. I like Glee and Phineas and Ferb and also Sudoku. Am I allowed to have a personality and preferences, or just perseverations? Is my deeply and inconveniently round-about, pedantic, literal, and analytic way of thinking and using language a sign of a what a profoundly gifted child you were, Julia (and you know, no one ever tells the kids in the gifted programs that they see themselves as gifted first and human second, or that they should call themselves “persons who experience a label of giftedness”) or is it a symptom of some monster hiding in my neurons?

I would argue that it’s both, and that it doesn’t matter. Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism). I also wouldn’t be the same Julia I am now if I hadn’t skipped eighth grade, or hadn’t spent a summer at Stanford, or hadn’t been in choir ororor…

I’m Julia, and I’m autistic, and I will apologize for, justify, qualify, neither.

2.

The dichotomy between being a person and having a disability is a false, and useless, one. It’s based in the notion that people with disabilities they can’t hide or that we can’t pretend to ignore aren’t people. In a certain, socio-linguistic, sense, that’s true. Disability is used to mean something inherently bad and wrong and scary and consuming and destructive and sick, and why would you ever want to include that in any way in your identity or personhood? I myself have said that in a perfect world, there would be no such thing as disability. But please, pay attention: it’s very, very important to look at how the same word can be used a few different ways here. In the above scenarios, where disability means bad, I’m quite literally talking about what disability means, what the word is used to signify, what attributes are assigned it, how our current modern Western society places it in context and value. But that’s not what disability inherently, objectively, physically and literally is.

When a car is disabled, it doesn’t work the way it was designed to work anymore. Human beings, though not designed and constructed in factories like cars, are similar. There is a certain range of activities and capabilities to which most of us are accustomed. When someone isn’t able to match up, they too become disabled. Difficulty walking, talking, hearing, seeing, eating? Disability. This is what disability is.

Notice, though, that when a car stops being drivable it doesn’t also stop being a car. Similarly, a human who can’t do some expected human things doesn’t stop being a human. In some contexts, a car that can’t drive is a bad car, worthless, lesser, low- or non-functioning. In others, though–art, architecture, scrap metal (remember, humans aren’t cars and these examples don’t have direct equivalents for us, please don’t try and find the scrap-metal humans), a car with an exploded wheel is valued positively. Similarly, in a world without stairs, using a wheelchair can be an advantage. In a world where everyone uses sign language, only speaking with your mouth is a disadvantage. Meaning and value and worth get assigned to people based on how useful their range of capabilities and potentials are for various activities. A person who can’t participate in the activity they are expected to is disabled. This is what disability means.

A disability is a stigmatized difference, one we haven’t found a slot for yet. I would love for that stigma, that disabling context, to go away. The raw physical difference itself though? It’s a part of me, and I’m not going to hide it, ignore it, or lie about it.

3.

Quite frankly, it doesn’t matter whether or not I see myself “as a person first, and a disability second.” It’s not going to keep me safe. I know exactly what the other people in the store think when they see me rock, flap, cover my ears.

On the internet, maybe, I have the luxury of expounding on the finer points of person-first versus identity-first language. In real life, in a world where our parents kill us, our classmates abuse us, and our employers are virtually non-existent? I really don’t have that luxury.

4.

As long as there are people demanding that I call myself a person with autism, as though I am just cohabiting with two different brains, one of which I should really want to discard at the soonest possible opportunity, I will call myself autistic out of sheer defiance. The autistic parts of myself are always what are going to be punished and cut away at, they are what are going to get me hurt and killed, and I will put them in the front where everyone else already sees them and fly them as a goddamn flag.

5.

I am not flattered when you say that I don’t really see you as autistic or it’s just a label.

Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.

It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.

For the record, I don’t really see you as much of an asshole, usually.

Well, yes. Your child is disabled. So am I. I thought we were past that?

(Is Stephen Hawking low-functioning?

My child is no Stephen Hawking. Indeed. Neither am I. No offense, but neither are you.)

So often the dividing line between really disabled (my child) and high-functioningaka not really disabled(you, a self-advocate disagreeing with me) is writing a blog post or making change for a purchase or reading. I remember being told that if someone can add and read, they can live independently. Well I hate to break it to you, but I am very good at both of those things and I can’t live independently, not even close. I just don’t think that this inability makes me worth less or nothing.

I’m not disparaging the reality of complex developmental and physical disabilities. My own world must function in a parallel and yet fundamentally different and separate realm from even that of my typically developing sister. I have enough imagination, enough personal experience with my own disability, enough time spent living and working with other disabled people, and enough of an ability to hear what people who live with complex developmental and physical disabilities have to say, to know that in some sense it’s a question of scale and that the experience can be dehumanizing for everyone involved.

I’ll spare you the gory details of my life, in part because they are private and in part because I refuse to be a self-narrating zoo exhibit. Been there, done that, Temple Grandin and Donna Williams are better at it. I’ll just say this: it never ceases to amaze me how an entry posted every two or three weeks in the ether about deserving human rights somehow reveals–or, rather, erases–the every intricacy and ramification of a person’s disability in their life.

7.

If my child could write a blog post like this, I would consider him cured. Fascinating. Have you taught him how? Have you given him the time, tools, technology, and accommodations he would need to do so? Have you exposed him to the ideas this blog post runs on, or has he been sheltered and infantilized? Has he been given an accessible, for him as well as his audience, means of communication? Remember, behavior is communication, that’s Best Practice. Have multiple literacies been facilitated? Remember, everyone reads, everyone writes, everyone has something to say is the current forward-thinking in special education, especially for children with complex access needs. But you’re an advocate for your child, of course you must know that. Silly me, I apologize.

Have his attempts at self-determination and self-advocacy be respected and responded to, regardless of form, or has he been taught that passivity is better?

If he were to want to blog about his favorite cartoon, would that be okay? Or does it need to be serious, age-appropriate, legitimate-in-your-eyes business, every time, all the time–because there are no frivolous blogs anywhere on the internet, are there.

If he were to want to document and share his thoughts via, say, music or a painting or an arrangement of objects, would that be okay? Or must it be words?

Are there limits on chances for this? Is any human being ever stagnant?

Oh, and by the way, your child is still a child, right? How many children blog, do you know?

Sorry, I thought this was worth taking seriously.

8.

I am not going to make nice.

It’s a common directive. We all want the same things. How can we ever expect anyone to listen to us when we can’t disagree respectfully amongst ourselves?

I am not going to pretend that a power imbalance doesn’t exist. I am not going to pretend that when non-disabled people attempt to end a discussion with self-advocates they did not enjoy, it is with chastisements and pleas to just get along which hit about a million times harder when aimed at someone who’s been taught to have quiet hands and who’s first sentence was Iwantball PLEASE and who, when they were bullied, was sent to social skills training while their abusers were left roaming in powerful packs of friends.

(In no other minority community is this level of power-play tolerated. You are not our voices, we are not the same, we do not want the same things, and if you aren’t disabled? Then by definition you are not a member of the disability community.)

You have the power. If you do indeed, as you claim, want to be allies, then I suggest you start acting like it.

(And, because I must be nice and patient and helpful and I must educate the people telling me to shut up: for god’s sake, if being an ally, let alone a super-special parent ally, is so very hard, check out PFLAG.)

9.

This is not a “disagreement.” You know what people disagree about? Pizza toppings, ice cream flavors, what Shakespeare meant in the third stanza. Things with small consequences.

You know what happens when we “disagree” about disability?

People die. People get aborted, people get institutionalized, people get sterilized, drugged, and neglected, people go without necessary support and services, people are dehumanized, people are abused, people are silenced, ignored, and erased, people suffer emotional and mental trauma and distress with life-long consequences.

Just as “disability” has become an ugly word for a physical fact, so “disagreement” is being used, here, as a polite word for an ugly thing.

I call bullshit.

10.

I started blogging, years ago, as a therapy tool, as a way to modify journalling so it would be accessible to me. It turned, slowly, oddly, and very autistically, into a method of communication. Now it’s one of the ways I advocate for myself and my people. Mostly I think of it as a survival strategy.

I couldn’t ‘ agree more with what you’ve written. And, BTW, I am the NT mom of a 9 yr old girl who happens to have high-functioning Asperger’s / be autistic – whatever… She is smart and funny and sweet and infuriating and imaginative and passionate and anxious and PERFECT s only she can be. And as independent as, well, what 9 yr old is EXPECTED to be independent??? She is who and what she is and we love her completely as is, and don’t see her as any more flawed than her NT sister – we are all humans and all humans are flawed in some way… and wouldn’t the world be a dull awful place if we were all perfect and the same??!?

I hope never to teach her “quiet hands” or anything similar, though ( and feel free to vehemently disagree and correct me if this is out-of-line ) I hope to give her the life-tools to choose it or something like it at any point for herself if SHE finds it either helpful or necessary in order to accomplish whatever it is she is trying to do at any point in time. AND to choose to be loud in in someone’s face… and to know and value the difference.

I imagine given a few more years maturity and life experience she might write almost the exact same thing. Though I hope she won’t have the NEED. Not that I hope she won’t want or need to express herself… it’s that I hope she will have had the experiences of acceptance of her WHOLE self by enough people for this type of entry to be unnecessary.

Thank you, from the depths of my soul, for the reminders to be mindful of not only what we say but how we say it… of how we as parents and as PEOPLE experience our children’s experiences and how that may fundamentally differ from theirs. Autism or not. And that we need to listen better – and think about more. And that speaking on someone’s behalf does NOT mean speaking FOR them. And to think more about how we give children – or anyone, really, the tools to express themselves, and how we value what they opt to express and in what ways…

Julia, I really loved this. I’m a NT parent of 5 year-old twin boys who are both autistic. I saw some of what you said quoted on Corina Becker’s blog last night and then found the entire thing today via Landon’s blog. Would you mind me reblogging it? Let me know. Thanks again.

Landon sent me here, and I have to say thanks to both of you.
I’m intelligent, and sometimes outraged, and more often than not, in order to be socially acceptable, I must be less outraged, and less intelligent.
Most people in my life don’t or wouldn’t understand my fear of being on the street, being doped up in a hospital, or being abandoned by my few friends and family. I feel sometimes like I hang onto my social acceptance by a hair. Conversely, other times I feel like I’ve lost myself in the behaviours I ape by a lifetime of habit and adherence to ‘the rules’.
I’ll be saving this one to pdf 🙂

I have to say, I was so incredibly moved reading this. And in some way, embarrassed. Because my son is only 5 years old and I write a blog about our lives, dealing with therapies and fighting the Board of Education. Mainly because we’re Puerto Rican and autism among Latinos isn’t discussed. It’s something to be ashamed of. And I am not ashamed of my son. And I write to let other people know – it’s okay. We’re okay. And so is my son. I don’t want to cure him, fix him and stop him from stimming. I want him to be himself. And I want him to be happy.

But after reading this, I think – will he be angry at me one day? For saying he has autism rather than autistic. Will he consider me his ally or enemy? Up until I read this, I thought I was his ally. But am I? It’s a fine line.

beautiful and stunning and insightful….all at the same time. On a side note when my son lines up his cars or takes pictures of various objects and shadow and lighting intricacies in the house I don’t try to “fix” him but instead try to see what HE is seeing. I view it as a small special chance at a glimpse inside his thoughts and his mind and his eyes. He isn’t taught “quiet hands” as I am sure there will be times in his life when he will need very loud hands….he is however taught not to hit those he cares about or to throw things at us and if he feels the need to scream and yell and growl and vent then he is taught that we can’t handle it in the house but we will go outside with him to where it doesn’t echo as much and encourage him to do so until he feels “done”,…he is wonderful exactly as he is and sometimes makes me feel like a bumbling idiot that only sees the world as other’s have decided I should and he is trying to show me a different way. That is not to say that I don’t have dreams of him being a functional member of society at some point so that if something were to happen to me and since our family is so small and scattered he won’t end up institutionalized…..I just don’t believe he needs to be “fixed”….God put him on this earth for a reason and I am sure he will find that reason and show us one day.

[…] see it all the time. Someone posts a link to a blog post or article written, either directly by an autist or otherwise showcasing their perspective. Occasionally, this even happens with something posted […]

my daughter is autistic. her autistic mind works just fine. not to euphemise, but I like to consider her neuro-diverse as opposed to neuro-typical (like boring old me) she is also gender diverse, transgender actually. we have fun together. learn together. grow together. I love your post!

I am the mother of an autistic 7 year old daughter. I don’t follow many autism blogs, so this whole conversation seems out of my league. My question is this: where is the line between advocating for your child and not letting the child advocate for herself? My child, currently, would advocate for not having math homework since it is so beneath her. She has been doing second grade math since she was three. But in my discussions with her teacher, we decided it was important for her to do the homework because the class corrects and discusses it in the classroom the next day, and for her to miss out on that would mean that she would miss the important social aspect of her homework. Am I wrong? She is only seven. Does a 7 year old get to decide what is best for her, autistic or not?

My other question has to do with this: I refer to my daughter as autistic. I am not shy about it, but I don’t go yelling it from the rooftops either. My experience with this is that any parent without a disabled child is aghast. “She’s AUTISTIC? I NEVER would have GUESSED. She’s SO high FUNCTtioning.” Same thing, every time. Then, I feel like I am defending her diagnosis. Proving that my child is autistic over and over again. To complete strangers. So maybe I should keep my mouth shut? But then – I’m not ashamed of her. She is autistic, brilliant, an amazing artist, funny as hell and the happiest kid I have ever met. I would tell anyone about those other qualities, all of which make her – her. And you may say that now I have made it about me, but it is the topic you brought up. So I will say once again – I don’t understand where the line is. I am her advocate while at the same time teaching her, slowly but steadily, to be her own advocate. Same as I do with my other daughter who is not autistic. I worry a lot about being offensive to others. If I call my daughter autistic instead of “having Asperger’s” is that offensive to others who are not as high functioning? Or *their* parents, for that matter, who might not believe that my daughter has the right to embrace her diagnosis?

Though I have no first hand knowledge of what it is like to be autistic, I know it is not easy. I already have to explain to my girl why things are so hard for her. But neither is it easy to be the parent of an autistic child.I don’t know how it is to be one, and I am not positive, but I am pretty sure you don’t know what it is like to be the other.

I will be interested to go back and read other things you have written. And if you have any insight about how to navigate self/parent advocating thing, lay it on me. It is always interesting to hear what adult autistics have to say about their experiences.

I gotta say…and I do not mean to usurp your judgment as a parent…but your daughter’s judgment with regards to her math homework seems pretty damn sound to me. (I’m 29, diagnosed with Asperger’s, and was considered gifted when I was in school, just for where my perspective is coming from.) There is no important social aspect to math homework. Especially not homework that’s several years below your ability level. In her position, as I often was, I felt like I was being deliberately held back from what I was capable of. It was a waste of my time. It didn’t socialize me better. It made me resentful that people apparently valued my conformity over my ambition and my actual abilities. And since I was incapable of the conformity, I lost out both ways. I felt coerced to be dumber than I was for other people’s comfort, and since I couldn’t do it, everyone was always mad at me. It was a big old nail in the coffin of my trust for adults, because I knew (and frankly, I was correct) that it was not in my ultimate best interest.

So, while in many ways, no children should not be given final say on their lives, or a lot of kids would be having cupcakes for breakfast, lunch and dinner. But….I really think that taking your daughter seriously on this would be well worth it.

My son is 3 and autistic. I think, had I not read your reply, that if I was in this mom’s position I may have made the same choice. Hold my child in place so that he may integrate in the social experience in school. I never would have looked at it from the perspective that the need for conformity was more valuable than his ambition. Because it’s not.

I think as parents we want our children — all of them, autistic or not — to have the best, happiest, most independent life possible. And our only experience of these things is NT, so we err to that as the framework for adult life. It’s not about valuing conformity, but understanding that the social experience (for better or for worse) is the root of our lives, so we must … make/force/teach ?! … our children how to live inside that construct if they are to have enriched, full lives.

Our intention is clouded by our own life experience. Our faulty judgement is not intentional because we value conformity more than our child’s abilities, it is because we love our children so much that we try to shape their lives the best way we know how. Which is “our” (the NT) way. And, clearly, the root of the intention is faulty because it presumes that in order for your life to be rich and full, that you must emulate our experiences.

But I am learning. I am trying to take as much of it in so I don’t marginalize him by improperly speaking for him at any point in his life. Insights like this are teaching me. I accept my son fully for who he is, I loved him before he was labeled. In fact, I loved him before I ever even met him. Thank you for articulating where we fall short. I will try to do better for him.

Hello all — Liz Ditz here from the United States. I’m a co-founder and co-editor of the group blog The Thinking Person’s Guide to Autism (TPGA). This week we are hosting a dialogue on just this subject between Zoe, an autistic self-advocate, and Robert Rummel-Hudson, a disability advocate who is the of a young girl with a severe communication disorder other than autism.

Julia, I don’t know if you have commented at before (while NT, I’m bad at faces AND names…)

The dialogue is between Zoe, an autistic self-advocate, and Robert Rummel-Hudson, a disability advocate who is the of a young girl with a severe communication disorder other than autism.

Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect — especially when it affects our ability to work towards common goals.

Building constructive conversations and creating real social change isn’t a garden party — it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that’s fine. You don’t have to participate in these dialogues to learn from them. “

You have given me much to consider. you have a fantastic flair for writing and I enjoyed reading this. I have also decided after reading this that I love the word pedantic. It sounds so nice. I hope I don’t ever make any of my kids feel broken… I have to give this some serious thought thank you. feel free to come over to http://www.you-leave-me-breadless.blogspot.com and check us out too

Great post! I just worry so much about my beautiful girl. If I dig deep it isn’t her that I worry about exactly though, it’s the rest of the world! The people out there that she’s more vulnerable to, being non-verbal and Autistic. She’s only 4, so I guess that’s how most people feel about their 4 year old children! What would you consider to be the best way to advocate for non-verbal Autistic friends and family? Maybe there could be a followup post (or maybe there already is one that I haven’t found) about positively advocating and helping your ASD child to become an advocate themselves (or do whatever they want to do!). A bit of a “Dear Autism Parents, Here’s what you do”? Thanks – I’ll be reading much more!

Also, I had a bit of a moment at her school today that I’d like everyone’s opinion on… She can’t stand the sound of other kids crying/squealing. But her teacher said something along the lines of, “she has to get used to it”. She’s said this a couple of times now about a few things (like sharing her favorite thing, taking turns etc) and I think to myself, we can try to teach her this “lesson” about sharing/other kids noises/taking turns all you want, but while she’s crying and upset she’s really not taking in your “lesson”… But I don’t know how to communicate that exactly? Or if I’m even right about it? I just think it doesn’t align with the reality of her – she’s a 4 year old, non-verbal Autistic child! Am I making any sense?

I got that line a lot as a kid. I still get it occasionally as an adult, and take that line as a huge warning sign that this is a person I’m going to find very unpleasant to deal with. My instinctive question has always been ‘and what if I can’t get used to it? what then?’ As a kid, this kind of comment always made me feel despairing, because I never believed I could get used to whatever it was. (And for the most part, I was right, though there have been exceptions to this.) And they made it sound like everything good in my future hinged on me learning that particular skill, which I couldn’t even imagine being able to do.

I think my teachers hoped telling me this line would convince me to do what they wanted. It never seemed to occur to them that I wasn’t capable of doing what they wanted, or at least not consistently.

I don’t know – I ‘m not sure that in this instance I disagree with the sentiment but I DO disagree with the presentation!… There will always be people who will make noises in the world. The only way to avoid them is to isolate oneself or to carry noise cancelling headphones everywhere ( not the worst idea, either! ) And isolation all the time gets lonely. And makes it hard to DO anything…

I think that if we allow our children the freedom to stim as they need in the ways they need ( which we SHOULD do so long as they are not injuring themselves or others ) we need to teach them to respect the same needs in others – that another child might NEED to scream or squeal or cry right now, even if it is hard for us to listen right now.. It’s something I work on with my 12 yr old ASD kid all the time – that she can’t make the noises she wants to make when she wants to make them and then turn around and yell at her sister to be quiet because it bothers her to have her sister sing, or hum, or squeal… that her sister has the same rights to be herself and express herself as she does. Perhaps if it was presented that way it would sound less condescending and callous.

Legally speaking, she doesn’t have to get used to it. Get her an IEP that allows her to have noise-blocking earmuffs in the classroom. People grow up with serious psychological problems when they’re being physically hurt and caretakers openly endorse it.

LOVE this. I have a 7 yo autistic son. I have always said he “has autism”, but I will change that now – he is autistic. I do not limit his stimming, verbal and tactile. I don’t want to “fix” him, because then he would not be the same kid I adore. And besides, he is not broken. I love his take on things – it’s so black and white. He makes me laugh daily with the stuff he comes out with.
I’ve been told “he doesn’t look like he has autism”. REALLY? What does LOOKING like he has autism look like? A friend who is no longer a friend said “he looks normal”. The inference I took is that he was less appealing now that she knew he is autistic.
His school has been very good with catering to his abilities. When he was in his first year of school, at 5, his teacher (who was WONDERFUL and her son is an Aspie), told me that he was bored with maths, so could she give him higher level work. Of course I said yes. So at 5, in reception, he was doing year 2 work (7 & 8 year olds). Of course, that means that now, in year 2, he’s doing year 4 work lol. The teachers are just creating different work for him and he’s breezing through his maths. Other stuff, reading and writing, isn’t as fun for him, but he tries really hard.
I think I was pretty lucky to be chosen to be his mum.

Reblogged this on Inside the mind of autism- and Sila and commented:
Could not have said it any better. This isn’t to cause arguments or drama. This is to explain my point of view- Of someone who IS Autistic and identifies as such. By trying to separate it, you’re trying to imply it’s “bad” and needs to be eradicated or “cured”. It’s just not fair.

Love everything about this post, my 6yr old nephew is autistic and that has made my think about this disability more than any other; i’ve always found it annoying that so many people prefer to use the term special as if just not calling it a disability did antything other than make it easier for themselves to deal with or be in denial about it instead of accepting their child’s difference and moving forward in a manner that meets their kids particular needs, I can’t comment without saying that reading this post inspires me that one day I will have a conversation like this with my nephew, thanks for a great post.

I’ve been working with disabled people for over 20 years, and am disabled myself – I’ve had the “importance” of people-first language pounded into me, so much so that I had to stop myself from writing “people with disabilities” and “have disabilities” in the above sentence. I am learning about why I need to adjust my thinking about people-first language. Your perspective humbles me and fills me with deep regret for not taking this journey sooner. Thank you for reminding me never to make assumptions, and for showing me just how much I still have to learn,

I’ve been reading your posts now for hours. Your writing rocks me to my core.
My autistic son is 3. He is a sweet, joyful boy obsessed with music and Toy Story. He jumps and flaps and squeals when he is happy and asks, “Are you happy?” And I beam. But I do turn his to face me when I ask him a question about whether he wants toast three times and he can’t stop singing Kermit’s “Rainbow song” long enough to hear, acknowledge or answer.
Random people ask with great weight, “But I understand there is a whole spectrum? Where would he be on that?” or “He seems very high functioning.” or “Aren’t ALL boys (or 3 year olds) like that?” I refuse to engage when other autism moms/aunts/grandmothers/etc. want to discuss whether my boy is high functioning or not. Who cares? “High functioning” seems to have little to do with the literal definition of those words. And he has many more years to learn and develop. So, I don’t know yet. Maybe, if we are lucky (insert sarcasm), some psychologist in our future will deny he ever had autism. They’ll change a code and all the hard work he has done won’t count. I’ll want to punch that psychologist in the face, but maybe it will happen. Or maybe he’ll be a drummer and all of the pounding and flapping and auditory seeking just won’t matter to anyone anymore.
Anyway, I ramble when I’m nervous and feel a little fangirl nervous commenting here. Your writing really does rock me to my core. I’ll be back to read more and I’ll think about your posts for many days to come. Thank you.

[…] interaction, facing biases and ignorance of our privilege that we never knew existed within us, and rebuilding ourselves as parents (point number 5 is especially important) from the bottom up. It has hurt. It has not always been […]

Thank you for this wonderful and honest post. My Autistic daughter is 4, and as she develops her communication more, she is starting to voice her opinions on things more, and it is a beautiful thing. I pray for the day when she can tell us, and the rest of society, how she sees the world, and how she feels. Right now I demand respect for her, but soon she will command it herself. You have given me a new level of hope, and I pray she can be as honest and brave as you as she grows up. Thank you and God bless.

Although I am not NT, I am an “autism parent”. I don’t understand why the tone of this post is so condescending. I love my son more than you could ever love GLEE or Sudoku. I’ll call autistic people whatever they want to be called. Is there some great population of parents of autistic people that are fiercely defending the wording “people with autism” over the wishes and best interests of their children? I can’t speak for all parents of autistic people- but I bust my butt 24/7, 365 days a year to care for him, defend him, teach him, and advocate for him. I don’t need a pat on the back…. but this post kind of feels like a slap in the face.

[…] Dear “Autism Parents” by Julia at Just Stimming is a pretty intense and necessary essay from the perspective of an autistic adult on the flip side of the implications of how parents sometimes talk about, think about & interact with their autistic children. […]

Reblogged this on Serendipity: Life is a Garden and commented:
How to discuss those who struggle with mental illness and disabilities is ongoing. The modern approach is to say that someone with bipolar disorder, for example, has bipolar disorder instead of saying, “So and so is bipolar,” as has been the practice. I have fully supported the modern disconnecting of a person’s struggles from their personal identity. This blog post challenges that idea and practice.

Just a note–different communities of people with various disabilities have different preferences, for equally valid reasons. People who do prefer person-first language for themselves should have that respected. There’s no one right language construction for all disability communities; there’s respecting what people feel about themselves.

With regard to the autistic community, the original, intended meaning of person-first language was distorted pretty badly when professionals took it from the self-advocates who originated it and applied it back to us. It was given implications that it didn’t initially have.

Reblogged this on Pasupatidasi's Blog and commented:
as mom to a beautiful neuro-diverse, transgender daughter i am always impressed by this person’s writing! her blog posts are nutritious and enlightening…enjoy!

My son prefers to refer to himself as having autism for the much of the same reasons you prefer to call yourself autistic. He is mature enough to decide how he identifies himself and how he conducts himself so we take our cue from him. Sometimes he prefers to self-identify, sometimes he doesn’t. Sometimes we agree as parents, sometimes we don’t, but we always let him make the decision.

Woohoo! Young lady, you rock! (by which I mean you are awesome, I have no idea whether or not you actually rock)

My 18 yr old son is autistic and has always referred to himself as autistic (not a “person with autism”) and we do the same. He is not currently living independently, but quite frankly I’m glad he’s not – I’m also disabled and I’m not sure I could get along as well as I do without his contribution to the household!

He starts college in a couple of weeks – he will be studying video game development, which is his passion and we encourage him in it.

I am so glad you have found a way to stand up for yourself that works for you. I hope I have done half as well for my son (he doesn’t currently choose to blog, but when he has an opinion you’ll darn well listen to him!).

Reblogged this on On a long enough timeline, everything changes. and commented:
OMG yeah. You’d think anyone who is into feminism, queer politics, or whatever would totally get the gist of this… but disabled people, specifically autistic people, are not apparently a minority group with the same rights to self determination as other minorities.
Way to call it Julia, I love it.

My daughter, who is in heaven now, had autistic tendencies…When she accomplished something, and she was proud of it,, she would give a thumbs up,, I was very proud of this,, as this was something she did on her own,,, Charlotte was plagued with debilitating seizures,, which often left her in a state where she would not be able to speak… I would sit, lay, with her until she came back to herself… when she would give me a thumbs up, before her ability to speak came back,, that sign gave me cause to know that that cluster was over..I went to pick her up from school and the teacher and her aide said they had something wonderful to show me,, something they had been “teaching”/ “training” Charlotte for to do for weeks,, rather “not” to do!! When I picked Charlotte up a days end,, I would ask her how her day was,, she would reply,” Great”, or ” not great”, depending on her day.. and then she would give the thumbs up!! This day she did NOT do the thumbs up!! They had trained her not to do it!!!!!!! The teacher/and aide, decided it was not necessary for her to do this,, and some of the other students were starting to do the same..Can you imagine my devastation upon hearing this?? Why,, why,,, why,,,, I never trusted them with Charlotte again,,, I eventually gave up my job as a CNA, and went to work as her Aide at school..

I realize I may be the odd duck parent, I’m not even sure if I’m NT as I see so much of myself in my daughter who is Aspie. She is adopted so I can’t claim she got this gift from me. It’s not a disability. It is a beautiful wiring difference in the brain. All children that I know that are Autistic or Aspergers have amazing gifts! Be it art, music, math, science, computer, etc. (unfortunately, I know no adults.)

Yes, it can be hard on both sides. She doesn’t understand me some days and I don’t understand her, communication can be hard when she is literal & padantic and I’m not, the bonus is we are both stubborn and eventually can get our ideas & thoughts through to each other. After reading your blog today, it made me realize that she may need other ways to communicate even though she is verbal, because she does get frustrated, possibly her brain is throwing too much at her at once. (Thank you for that!)

Thanks for this! Quick question: our son (8 yrs) and daughter (7 yrs) are both autistic. At what age were you told that you were autistic? I haven’t told our children yet & I want to make sure I am doing the right thing & approaching them in a manner that is positive & good for them.

It is a SPECTRUM (unfortunate label) similar to IQ (0-160+) vision, (totally blind to fully sighted), athletic ability (totally paralyzed to gazillion $ star) and so many other things. Your perspective belongs to YOU and how you interact with the rest of the world. Some are fortunate, some are in the middle somewhere, some have abilities all over the board, some will never have much chance to even perceived the world as those of us who CAN express ourselves in any language, written, typed, signed, or however one can communicate with others. Quit trying to label, quantify, or judge those whose lives you have not led.

Should I consider myself visually impaired because I need glasses to drive? Should I seek out others with similar needs because only they truly understand me? Should I feel blessed because my impairment allows me to see the world with a soft, beautiful focus? Should I delight in the wide range of glasses available to me that enhance my wardrobe? I’m delighted that my parents were able to help me realize that I am unique, I’m delighted I have the ability to be relatively comfortable in the world in which I live.

I am saddened for those who’s physical make up, makes life difficult, a daily struggle to even exist. My wish for them is that life were not so difficult, that they could have less struggle and more joy in their lives and the lives of their families. I can only do what I can, to accept, love, and provide support when I can.

The whole “person with” thing dates back to the 80s, when so many in the gay community were dying of AIDS, and people were trying to redefine their condition in a more positive way (both because of the stigma surrounding AIDS and because they hoped that positive thinking would help cure them). There is a huge difference between AIDS and autism (I’m sure there are many actually). AIDS is a disease that kills people – unless they receive aggressive, expensive medical treatments, and even then they may die. Maybe that is enough of a reason to refuse to adopt the same language. People with AIDS were stigmatized both because it was (and still is) so prevalent among gays and sex workers and also because our society has a huge fear around death. Some disabilities do kill (slowly) such as ALS, but that doesn’t mean that all disabilities should be so categorized or that having a disability is something to disown.

[…] Dear “Autism Parents”, | Just Stimming… – Aug 23, 2011 · I want to clear a couple of things up. 1. I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a …… […]

[…] Dear “Autism Parents”, | Just Stimming… – Aug 23, 2011 · I want to clear a couple of things up. 1. I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a …… […]

[…] Dear “Autism Parents”, by Julia Bascom. Julia is very positive and up-front about being autistic, and I enjoy her refreshingly direct and well-thought-through writing style. A worthwhile read for everyone, not just autism parents. […]

As this was posted around four years ago, I am not sure if you are still actively using this website but I would still like to comment anyway and hope that you are enough to read this.

I originally found this article trying to look up main points about teachers and other education board employees relations with autistic students but this came across instead. Even though it was not what I planned to find, I decided it looked interesting enough for a read.

I am an autistic 15 year old who is currently in into my sophomore year at high school, and even though this article is centered towards parents, I also really enjoy and appreciate this article in my own way.

A lot of times, I’m forced into admitting I’m autistic and I’m constantly forced to say I “have it”. I personally do not like it at all. I much rather view myself as the word autistic, and I detest having to say it in some manner where I have to make it sound as if its a tragic backstory to a character of an entertainment novel. However, if I say I’m autistic, without ANYTHING more or less, it automatically generates a ridiculous negative connotation into society’s minds. I really appreciate this article because I felt I could relate to you a lot, which is something I rarely experience.

I also thank you for including the part about how if autistic people perform something that people see as “normal” or on the same level as them, they completely deny that we have it in the first place. This happens to me routinely and it is one of the biggest pains I’d ever come across. Society thinks being autistic is such a tragedy to where if there is anything remotely “normal” about us in their perspective, we aren’t weird, bad, and/or abnormal (and what other terms people use) enough to even have it in the first place. I can write with decent enough grammar usage, like a lot of people, but since I’m autistic, people view this as something that proves I’m not because it’s in their “normal”. If I can stay in an Honors class all year, I’m now known as too “normal” to be autistic. However, If I freak out due to my sensory processing difficulties with sweat or anything else that is difficult for me, I’m now to autistic to be normal. It’s ridiculous.

Finally, I really thank you for addressing the part about speaking out and self expression. You’d think people would actually listen to people who are autistic if they are addressing it, but that apparently just doesn’t grasp their minds and they have to listen to everyone else BUT us. And with the self expression, I would really think it’s simple enough to realize there’s multiple media forms of it besides writing, such as painting etc., but that’s too much for people to grasp as well.

I know there is much more in this article, and even though I’m not a parent of an autistic child, mainly because I am one myself, I still enjoyed reading your points and could relate to you. Since you mention your own children, I also assume you are much older than me, but I find it really inspiring that I was still able to relate to you even with that age gap because I’m constantly treated as a disaster because I have a difficulty relating to others. To relate to someone who’s not even exactly in my peer realm so to say, makes me feel a lot better about myself. (I’m sorry if that was expressed too strange to understand)

So, to sum it all up, I really want to thank you. I know parents have thanked you but I didn’t notice any other autistic people commented and I feel like the parents are thanking you for a different reason to mine. This article made me feel that I’m not as alone and a giant mess as society tends to put me in the realm of things.

“people get aborted”
hold up. hold the hell up.
people do NOT get aborted.
fetuses get aborted. people don’t. fetuses are NOT people. women are people. the disabled are people. fetuses? ~NOT~ people.
and women have every right in the world to do what the fuck we want with our bodies.
i was about to comment on how well written this is, but woah. humanizing fetuses, controlling women. turning abortion into an act of ableism. how very sexist and disgusting.
not so sincerely, a disabled female.

Are you aware of what happened in England immediately after a prenatal test for Down’s Syndrome was developed?
(hint: it involves abortions)
(hint 2: it involves there being more abortions)
(hint 3: it involves women deciding to have an abortion solely because a test said they were going to give birth to a baby with Down’s Syndrome)
(hint 4: hey guess what it very likely to happen if A$ gets their way and develops one of those for autism)
(hint 5: aborting a fetus solely because of a suspected disability is literally ableism)
(hint 6: fuck off)